Botox - I actually have more of a comment than a question. Specifically to one of your members?

I read a review of one of your members who did not have a good experience with Botox treatment for her/his migraines. I wanted to be able to share my own experience with Botox with this person in an effort to help him/her, as it was a similar experience. I think I can help and am hoping someone can tell me how to relay a message directly to this member. I am a lifelong sufferer of chronic, often severe, migraines. So please be assured I am not representing any "for profit" entity, or otherwise. I simply want to tell this person my story in an effort to help. This persons user name is "Vomiecuz" and he/she posted a review on your site on 2/17/14. Can anyone help me get a message to this person? I tried to post my own review directed to Vomiecuz, but was not allowed enough character space to complete it and was cut off in the middle of my review.

Responses (3)

I apologize as I do not know that member; however, I did ask a question on here about Botox treatment for chronic migraines recently. I was told I meet the qualifications to have the procedure done, but I am a little wary/nervous about doing it.If it isn't too much to ask, may I please read your review (as it sounds very positive)? I have heard good & bad things about it, but mostly people talking of it not working/symptoms afterward. The 'heavy head' one freaks me out--some say after the Botox procedure (a somewhat 'conservative' doctor also informed me of this) there can be difficulty picking your head up for quite some time. I would love to hear/see a great experience with this procedure!I am in Pennsylvania, and am on a waiting list to see one of the best Headache Disorder specialists in my state. Anything you can please tell me about your experience would be a blessing. Thank-you!!

Well first of all, the best thing you have done so far is you have done your research and found the best headache specialist in the area. That is the unfortunate mistake a lot of migraine sufferers make. Not all neurologists are experts in migraine treatment... you need to do your research. And most of these doctors will have a long waiting period. But it is worth the wait. I am 45 years old and had to see a neurologist the first time when I was 3 years of age. He diagnosed me with migraine, and with what was referred to back then as "migraine stomach." He told my mother I was the youngest case he had ever seen at that time. It has been a lifetime of absolute hell. I have tried and failed most prophylactic treatments. The first time I had Botox was in 2004. I should point out first that back then it's use for the treatment of migraine was still in the experimental stages.

I had to pay out of pocket for the injections and the neurologist only did maybe 6-7 injections and only in my forehead. I got no results at all and was out A LOT of money. The second time I tried it, in 2006, I used a different neurologist who told me it did not work for me previously because the doctor did not inject it correctly. This new neurologist claimed he knew how to do it correctly and that I would have better results if he did it. Again, I paid out of pocket, even more $ than the first time. Again, it did not work. As you can probably imagine, I was done with trying the treatment and was convinced it just did not work. Well, the past several years for me have been worse than ever, to the point I can barely hold down a job because I cannot get there to work. I am always home in a dark room, puking my guts out, etc. I will spare you any more details. I finally decided to try Botox again because I was incredibly desperate and also had heard that it had finally been approved by the FDA for migraine treatment, and so my insurance would cover it. This doctor, who I just saw this past September for my first treatment, knew what she was doing. She did a total of 31 injections to sites the previous doctors had never injected. Not just the forehead and head, but the neck and shoulder areas need to be included. She warned me of the most probable side effects and gave me the facts about the treatment as she had observed in her patients instead of what Allergen, the supplier of Botox wants you to believe. It takes up to 10 days after the injections for any therapeutic benefit. After that, the typical therapeutic benefit will last about a week after the first treatment. With each subsequent treatment, you will experience relief from symptoms for a longer period of time until you work up to a full year of quarterly injections. After a full year of having injections every three months, most people will finally have the full three months of relief. So most people need to give it at least a year before they give up entirely on the treatment. For me, my results were exactly what the doctor had predicted. It took about 10 days for any therapeutic benefit. After that, I got about one and one-half weeks of relief. It was the best week and a half of my life!!! I had been so used to being in constant pain that I had forgotten what it felt like to not be in pain. The only undesirable side effect I experienced was eyelid drooping. But it was not so bad that my eyeglass frames could not cover it up!! So now I am just waiting until I can have my next series of injections. Health insurance will only pay for the injections every three months. My doctor told me it actually needs to be given every month for the best effectiveness, but of course insurance companies will not pay for that. But I am just praying that by the time I have had a full year of injections, every three months, then I will have the full effectiveness that Allergen claims. When Imitrex came on the market in 1994, it was a miracle drug for me. If not for that drug, I would not have been able to finish college. But my body is weird in that it gets used to medications after a while and they no longer work. That is what has happened to me with the Imitrex. But I am still grateful it worked for me long enough to finish college. All medications will affect everyone differently. It is impossible to be able to tell who will have what side effects and who will have success with a particular treatment. What works for one does not work for all. But I would give Botox at least a year. If you don't have significant results by then, you probably never will. I could go on and on about this topic being a lifelong sufferer, and given the amount of research I have done. But I have already written a novel here, practically. So I will stop here. But I am happy to answer any questions I can in the future. Just remember, I am not a healthcare practitioner. I do happen to work in healthcare, but in an administrative capacity. I have no formal medical training. Just need to make that clear. Good luck to you!

Thank-you immensely--you have been incredibly helpful to me & I admire your wherewithal & tenacity. I hope your insurance gets better about the interval of regimens you're supposed to be on, but seems like you're doing great with regards to managing your migraines currently!Best to you, Leslie

I did add my review (almost a novel in length!) in response to another member. Are you able to view it? I don't know how this site works. If you cannot view it for some reason, let me know and I will copy and paste it in to a response directly from you. Sorry, forums are not my thing. So I don't really know how they work. I joined this one solely because I thought it was important to spread as much info as possible on the subject.

I added you as a friend, but your profile states you do not accept private messages. Can you temporarily change your settings to accept private messages/questions so I can copy and paste my comment in to a message for you? If you don't want to that is okay. I can post the comment again. I am only trying to avoid it because my comment was quite lengthy. But I do want you to you to be able to read it. So, if you really don't want to change your settings, let me know and I will post it again.

When signed in to your account, in the box in the upper right-hand corner where it shows your user name, how many points you have, member level, etc. In that box click on "My Settings". You should then have a page titled "Update My Profile". On that page, click on the second tab labeled "Privacy Settings". It should be to the right of "General Settings". Under the Privacy Settings tab you have a bunch of options on how you want your privacy controlled. Scroll down to the last question, which is "Who Can Send Me a Private Message"? Choose either the second or third option. Both options will allow "friends" to send private messages. Specifically, the second option adds members of your support groups as well as your friends. The third option allows only friends to send private messages. Choose which button you want then click the "Save" button.

Try making a friend request directly to Vomiecuz. You can look up their profile in the members section and click on add friend. If they accept your friend request, and allow personal questions, you can correspond directly with them. Otherwise you'd have to use their name in your question headline and direct it towards a group that they're a member of and hope they see it. Hope this helps!